Reversal is Over

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Aqx99
Posts: 383
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Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Thu Jan 25, 2018 1:35 pm

O Stoma Mia wrote:Has the Pelvic Health Center nurse been to see you in the hospital yet? Maybe she can give some hints on how to manage pain once you leave the hospital. Perhaps there are some ointments or creams that have Lidocaine, Xylocaine or something similar that would help with your radiation-induced pain and skin problems.

Has your mother come to the hospital yet, or is she still at home? She might be able to help out with things at the hospital before you are discharged.

How is it going now? Has there been any reduction in pain level? Are you able to get up and walk around a little?


My mom comes every day in the morning and leaves in the evening. She has been helping me go for walks. I haven't had any pain medicine since 6pm last night. I'm on a normal diet now, though I am choosing my meals wisely.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

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O Stoma Mia
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Location: Budapest

Re: Reversal is Over

Postby O Stoma Mia » Thu Jan 25, 2018 2:18 pm

Aqx99 wrote:... I'm on a normal diet now, though I am choosing my meals wisely.

It's good that you are taking a pro-active stance with the hospital diet. What I found when I was in the hospital was that it was often better to decline the standard meal that they wanted to serve and to try to order something else that would fit into my dietary restrictions. For example, if the lunch for the day was announced as ham-and-cheese sandwich I might try to change it to an omelette or something else that I could handle. This meant that I would have to contact the kitchen before they sent the cart around with the meals. I tried to keep on a low residue diet there as long as I could.

Do you know how much longer before you will be ready to be discharged?

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal is Over

Postby susie0915 » Thu Jan 25, 2018 2:34 pm

Sounds like you are doing well. I'm so glad. Walking is good.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

Aqx99
Posts: 383
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Thu Jan 25, 2018 3:32 pm

O Stoma Mia wrote:
Aqx99 wrote:... I'm on a normal diet now, though I am choosing my meals wisely.

It's good that you are taking a pro-active stance with the hospital diet. What I found when I was in the hospital was that it was often better to decline the standard meal that they wanted to serve and to try to order something else that would fit into my dietary restrictions. For example, if the lunch for the day was announced as ham-and-cheese sandwich I might try to change it to an omelette or something else that I could handle. This meant that I would have to contact the kitchen before they sent the cart around with the meals. I tried to keep on a low residue diet there as long as I could.

Do you know how much longer before you will be ready to be discharged?


The nice thing about this hospital is that their food service is basically like room service. I have a menu that I can choose from. I just call down and place my order. My surgeon said that if I continue to do well, I might be discharged tomorrow.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

rockhound
Posts: 100
Joined: Fri Jul 14, 2017 5:00 pm

Re: Reversal is Over

Postby rockhound » Thu Jan 25, 2018 3:33 pm

Aqx99 wrote:
O Stoma Mia wrote:Has the Pelvic Health Center nurse been to see you in the hospital yet? Maybe she can give some hints on how to manage pain once you leave the hospital. Perhaps there are some ointments or creams that have Lidocaine, Xylocaine or something similar that would help with your radiation-induced pain and skin problems.

Has your mother come to the hospital yet, or is she still at home? She might be able to help out with things at the hospital before you are discharged.

How is it going now? Has there been any reduction in pain level? Are you able to get up and walk around a little?


My mom comes every day in the morning and leaves in the evening. She has been helping me go for walks. I haven't had any pain medicine since 6pm last night. I'm on a normal diet now, though I am choosing my meals wisely.


Nice progress !
42 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - Clear CT
1/18 - 5mm polyp removed during colonoscopy

Aqx99
Posts: 383
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Fri Jan 26, 2018 7:49 pm

I came home this morning! They were impressed with my progress. I had my first bowel movement last night around 11. I was able to feel it coming and get to the bathroom on time. That made me happy.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

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CRguy
Posts: 9454
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reversal is Over

Postby CRguy » Fri Jan 26, 2018 8:25 pm

DAMN !!!! it is strange what WE celebrate around here .... BUTT

Congrats on your first bm ..... :shock:
AND gettin' outta' da big house, back to YOUR house

Cheers homie
heal gently
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Atoq
Posts: 164
Joined: Wed Oct 25, 2017 9:31 am

Re: Reversal is Over

Postby Atoq » Sat Jan 27, 2018 6:51 am

Aqx99 wrote:I came home this morning! They were impressed with my progress. I had my first bowel movement last night around 11. I was able to feel it coming and get to the bathroom on time. That made me happy.


Congratulations! Always nice to be back home!

Claudis
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung

Aqx99
Posts: 383
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Mon Jan 29, 2018 8:27 am

At the risk of jinxing myself, I am happy to report that I have started to get a handle on my bowel movements. I don't have a perfect system yet, but I am already noticing a major improvement in my quality of life. I was able to sleep the entire night last night without an accident, or even having to get up to go. Hopefully I can continue to improve and get back to as normal a life as I can.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

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susie0915
Posts: 738
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Reversal is Over

Postby susie0915 » Mon Jan 29, 2018 8:41 am

That is great news. It should continue to get better I'm sure. So glad you are doing well.
58 yrs old Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc feels scar tissue
7/17 no change lung nodule
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule or scarring/inflammation

MissMolly
Posts: 481
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reversal is Over

Postby MissMolly » Mon Jan 29, 2018 9:29 am

Ann:
Congratulations on your ileostomy reversal and becoming pouch free.

Positive karma, lucky lady bugs, and the vested powers of an Irish 4 leaf clover for full healing in the days and weeks ahead.

You took a open approach with your ileostomy, breaking down faulty assumptions associated with having an ostomy through your determination to cast a wide net - to learn and educate yourself of the many product options and pouching techniques. Your successful reversal will newly place you as a valued resource and go-to point person for others on this forum with an accompanying ostomy.

Blessings and health,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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juliej
Posts: 2801
Joined: Thu Aug 05, 2010 12:59 pm

Re: Reversal is Over

Postby juliej » Mon Jan 29, 2018 6:34 pm

Aqx99 wrote:I came home this morning! They were impressed with my progress. I had my first bowel movement last night around 11. I was able to feel it coming and get to the bathroom on time. That made me happy.

Ah, I remember my first BM after my reversal. I was so damn happy. I wanted to take a photo of it and text it to everyone! :shock: Then I calmed down. :D

There will be ups and downs in the days to come, but every day your colon will be getting stronger. Introduce new foods slowly and if you have a negative reaction, remove the offending food and then try it again in a few weeks. Slowly you will learn what foods you can tolerate. It took me several months to get back to raw foods like salads and high-fiber fruit. But I can eat everything now. One step at a time!

Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 12/13/2017, CEA<1

Aqx99
Posts: 383
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Reversal is Over

Postby Aqx99 » Mon Feb 05, 2018 6:23 pm

Had my staples removed today. I feel much better after that. I made the mistake of eating chicken strips for dinner. I had an accident in my pants as soon as I finished eating. I'm still learning what foods do what to my system.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

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O Stoma Mia
Posts: 1202
Joined: Sat Jun 22, 2013 6:29 am
Location: Budapest

Food-Toilet-Exercise Log

Postby O Stoma Mia » Mon Feb 05, 2018 8:15 pm

Aqx99 wrote:.. I'm still learning what foods do what to my system...

O Stoma Mia wrote:...
Food-Toilet-Exercise Log- I have a Food-Toilet-Exercise log that I used for the first couple of years after reversal. It had three panels. In each of the panels I had items organized by time, where each item could have several subscripts to further describe the item. For example, in the Toilet log I used the Bristol Stool Chart for describing the type of stool, but I also had other subscripts, like 'size of stool', 'color', 'level of urgency', and 'time on toilet', etc. It was the same for the other panels: Each item entered in the spreadsheet had multiple subscripts.

The three panels were then interleaved and displayed on a master timeline so that I could see the overall pattern.

I haven't used my spreadsheet for a couple of years now, because my situation has stabilized, and I now know all of my bowel-movement trggers by heart. .But when I was first starting out, I used the spreadsheet on a daily basis for planning purposes.
.

NHMike
Posts: 1104
Joined: Fri Jul 21, 2017 3:43 am

Re: Reversal is Over

Postby NHMike » Thu Feb 08, 2018 11:52 am

Does the reversal surgery normally take four days in the hospital or is that due to the loop illeostomy?
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


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